The Lived Experience of MRKH: Sharing Health Information with Peers.

摘要: Abstract Study Objective To examine the process and emotional effect of disclosing a personal diagnosis Mayer-Rokitansky-Kuster-Hauser syndrome (MRKH) to peers during adolescence young adulthood. Design Setting Qualitative study using semistructured telephone interviews. Participants Nine women diagnosed with MRKH, aged 21-31 years, recruited via patient support groups. Interventions Main Outcome Measures Motivators barriers self-disclosure MRKH partners. Results tell about included significant trust in relationship (whether platonic or romantic), needing unload experienced burden diagnosis, sense responsibility be forthcoming if long-term romantic future was desired. The most common barrier telling others fear rejection being labeled “freak.” Although participants did not receive guidance from health care provider regarding approaches sharing diagnostic information others, almost all reported wishing they had received such counseling. Conclusion A elicits recurring anxieties disclosure on relationships that are inadequately addressed by providers. Guidance friends partners should provided whenever possible.